posted
Hi everyone..my loved ones and partner and friends are all very worried about my continued weight loss. My former llmd pulled my Picc line a week ago. One of the reasons was because my organs were being overtaxed by the IV nutrition.
So here is my dilemma...my body cannot handle IV feedings but I cannot eat much food. I ate one banana, 2 gluten free cookies, 1 cup of rice , 2 green drinks and a cup of soup for the day today. This is not enough food to keep a child alive, let alone a grown woman.
So what do I do? My liver and kidneys cannot handle the TPN apparently but I will continue starving to death with this diet. Any ideas at all? Thanks Jess
Posts: 870 | From ct | Registered: Nov 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You would benefit from bone broth, which is good for the minerals you're deficient in. I cook up bones leftover from pork chops and chicken legs, along with some onion and carrots, seasoned with sea salt.
Instructions from the Weston Price foundation say to add vinegar and to cook for a long time, like six to eight hours. I've never used the vinegar, which would help to leach minerals from the bones, and I only cook it for about two hours.
This broth is wonderful to use as a base for soup, but the taste is so good and satisfying that I usually end up eating it all myself.
Can you tolerate ANY fats? Not vegetable oils, you need good quality animal fats and coconut oil.
Another idea would be to use the SOTA Magnetic Pulser on the abdominal organs. Pulsed Electro Magnetic Fields (PEMF) influence cell behavior by inducing electrical changes around and within the cell. This improves the blood suppy to the cells, and speeds healing of injuries and infections.
Nutrients must pass through the cell walls to supply the mitochondria in the cells, which transform them into energy. When the cells don't have enough nutrients, you'll have pain and fatigue.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Oh Jess. I so sad reading this. I say don't worry about what's healthy. Forget the green drinks,forget gluten free and just eat what you can and want. You were doing pretty good a while back on white bread...Right? Pbj's, Mac and cheese. Lyme protocols aren't working for you. Don't over think, just do what you can and eat what you can... Even if it is white bread with butter, a baked potato, grilled cheese sandwhich... Just eat what ever works for you. Manga!
Posts: 1725 | From USA | Registered: May 2011
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posted
I am vegan so I cannot drink the bone broth. I tried for a few days to stop eating strictly vegan and even introduced Ensure again and it was a disaster. I cannot handle any animal products or anything with animal products in it. My digestive tract just cannot process it.
I do tolerate peanut butter and have been eating as much of it as I can. Still, I am so devoid of appetite and so nauseous and this is just exhausting. Thank you so much for the suggestions, esp about the pulser. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Thanks so much Kudzu...I just do not desire food AT ALL. I just wish I never had to eat again. Everytime I do eat I get sick as hell. This is just unbearable. I cannot take much more of this. UGHHH. Thanks again. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
I agree with what kudzu said. I was nauseated for about 6-8 months constantly and could only tolerate Lucky Charms cereal, pudding with extra protein powder mixed in, Nutella on graham crackers, etc. I called it the "hummingbird diet" because it was mostly sugar.
Not ideal by any means, but it kept me going and I didn't lose much weight!
See how you can add protein and fat into your diet! I bet there's something out there you can tolerate, if only a veggie-derived protein powder in water or pudding mix!
Posts: 330 | From TN | Registered: Sep 2011
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posted
Jessica, I understand as I often have 2-4 days a week of feelings of being devoid of any appetite.
Just ideas. Have you tried a smoothie of frozen berries, banana, Greek yogurt, whey powder, tart cherryjuice? Guacamole? Hummus?
There is a very good ginger tea to help keep the nausea down. It is by an organic tea company which brain fog is keeping from me.
Good thoughts sent to you.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Jess,
Adding COCONUT WATER could be very benefical for you and give you added strength as well as life giving nutrients. It is close to our own blood plasma. It tastes great cold too.
It is also antifungal and antiparasitic and will help balance electrolytes and keep you from getting dehydrated. Google coconut water health benefits.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Jess, You should ask your primary care doctor about
seeing a dietician. They would be able to help
you with great food options that would help you
to at least keep the weight you have on. Have
you tried or heard about orgain meal supplements?
Maybe you could try something like this since
you can't handle ensure.
Good luck. Limeaid
Posts: 84 | From Seattle, WA | Registered: Sep 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Those responsible for managing your TPN in my opinion did not do what they could to mitigate problems from the TPN.
They could have tried to get you Omegaven, which is proven to reduce liver stress from TPN.
They could have added L-Carnitine to your TPN, also proven to reduce liver stress from TPN.
They could have made adjustments in the amounts or proportions of fats/carbs/proteins in the TPN to make it more tolerable for your body.
And they could have had you taking milk thistle orally or via IV (I got some via IV from a special pharmacy) to help with the liver issues.
And they could have had you doing castor oil packs on your liver to help, as well.
I don't think the kidney stones were from the TPN. You didn't have them until you started the abx (specifically, rifampin, if I remember right). And I was on TPN for 3 1/2 years with no kidney problems, and know of many, many others who have been on long-term TPN with no kidney stone issues.
So in my opinion, you need a new doctor who can help you with your nutrition. A GI doctor or someone who has treated severe gastroparesis. I wish I knew of such a doctor for you to see, but unfortunately I can't find one here where I am either, sorry. But maybe someone else here knows of a good GI doc.
I would NOT waste time with a dietician....most of them have NO CLUE about the restrictions one must deal with when one has gastroparesis.
Vegetarian protein poweder is a good suggestion, as is coconut milk or coconut water. Peanut butter is good too. You can try other seed or nut butters as well, if you can handle them, just for variety and to help get additional minerals or nutrients that peanuts are missing.
Have you tried digestive enzymes? I find they help me tolerate things I cannot eat at all without the enzymes.
Praying for you...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Jess,
You asked about a gentle tx for parasites on another thread. Some suggestions were given. I know you are nervous about doing any tx right now, but your weight loss can be due to parasites eating your food.
Maybe there is a doctor in your area that does ART testing and is familiar with treating parasites. Something to look in to.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
jessica, how about blending cooked veggies and eating them. I blend my veggies many times because my body doesn't have to work so hard to digest them. Avocados have good fats and are smooth. Guacamole without the onion and peppers sets well with me. Sometimes I eat just that.
Posts: 620 | From Ks | Registered: Oct 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry, Jess. Be strong and take the good advice everyone here is offering. Sending healing thoughts your way. Posts: 2380 | From New England | Registered: Aug 2011
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posted
Thanks so much everyone for the thoughtful responses.
Gael, thanks for the advice about the parasites. And Razzle, as always you are a godsend. I tried to respond to your PM but it says your mailbox is full, so if you could clear it out I would love to respond to you.
Thanks again everyone. Jess
Posts: 870 | From ct | Registered: Nov 2012
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posted
Jessica, Sending you healing thoughts and prayers.
I don't know if this could help you given your situation, it's a Nutribullet, which is a high powered blender that purees foods much better than a blender.
I have some digestive issues, nothing like what you are going through. My blender was leaving pieces of unpureed foods. The Nutribullet does not leave food particles, it all liquifies.
Sold at Target, Bed Bath Beyond. About $99.
I also agree that you need a new doctor, maybe your friends and family could help you find one.
Blessings, hope and healing to you.
Posts: 873 | From WA | Registered: Dec 2005
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Jess
I know this is on th expensive side, don't know your budget, but this is an excellent protein supplement, if your body would accept it. It has the "essential" aminos in it, creates little nitrogen waste in your body to deal with, very different than the food-based protein supplements
While carbs are needed to avoid wasting away, so is protein, and this is probably the densest, most essential way to do it through the mouth.
Hopefully you can find some fat/protein things to digest. I used to soak raw cashews an hour, then blend with frozen fruit and water, make a pudding out of it.
Coconut water, as said, nut butters, ..., sugar if that's what it takes, as said.
Posts: 1927 | From se usa | Registered: Mar 2010
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Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
The reviews are very encouraging. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Vegans MUST supplement with Taurine. That's a vital key to help prevent damage to nerve fibers throughout the body and to vision.
Sadly, this information is not well known. It should be. Taurine deficiency can cause serious trouble.
I had hoped by now you would have been able to find a counselor such at the one in the post above. If you were not able to contact her, to see just who she may know near you, I hope that contact can be made.
There is no need to reinvent all the work she has done and she may have some very important connections for you. Hope so. If not her, someone LIKE her. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
quote:Originally posted by jessicabooklover: Razzle, as always you are a godsend. I tried to respond to your PM but it says your mailbox is full, so if you could clear it out I would love to respond to you.
Ok just cleared out my mailbox...sorry it got full and I didn't realize...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Jess, have you thought about making a vegetable broth instead of a bone broth?
Posts: 631 | From the south | Registered: Nov 2008
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posted
I realize that there are some dieticians out
there who don't know how to deal with complex
situations such as yours. But with my experience
in working with dieticians in hospitals and
clinics as an Oncology RN, I've worked with
many, many, knowledgeable dieticians who have
dealt with the most complex patients; including
cancer patients who are dealing with life after
colon cancer, gastrectomy, transplants,
leukeimias, lymphomas, gastric cancers, oral
cancers, throat cancers, liver, pancreatic,
and kidney cancers, and the rough road after
chemo and radiation treatment. Adding in
chronic disease management to these patients.
It something you haven't tried, so it is worth
looking into. Certainly you haven't received
much help from anything else you have done or
tried. It's a difficult situation. Also,
perhaps seeing a naturopath for assistance
could help you. They have helped many people,
including me, who struggled after traditional
treatment. And acupuncture doesn't hurt either.
Limeaid
Posts: 84 | From Seattle, WA | Registered: Sep 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
One other thought, forgot to mention, NAET (Nambudripad Allergy Elimination Technique), is an acupuncture technique that can remove food "allergies". Even if they don't function like most people think of as allergies, if your body acts negatively, it can impact digestion significantly. Just wondering if this would help, or at least be worth trying, maybe treat a few foods and perhaps you could eat and process them a lot better.
I feel like someone with gastroparesis tried this and it didn't help, someone other than you, that's a vague memory on my part that I heard that. Still, something to consider as not too hard to try, and has a chance of helping a lot.
Posts: 1927 | From se usa | Registered: Mar 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Acupuncture has been helping me! It seems to be quieting my tinnitus and it helped me to sleep through the night for the first time in decades!
I know it helped drain my daughter's sinuses when she had mono - like nothing else could do. I just discovered a community acupuncture clinic that has a sliding scale fee - and I found them to be very professional and supportive there. These clinics are a new happening in many spots all over our country.
Acupuncture can treat nausea, digestive disturbance, and appetite problems. I think you have nothing to lose by giving this a try!
Posts: 2380 | From New England | Registered: Aug 2011
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posted
Thanks again everyone...dbpei, I tried acupuncture but it did not help. Jess
Posts: 870 | From ct | Registered: Nov 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
sorry, Jess. I tried acupuncture in the past as well, and it did not help me. When I went to someone new, it made all the difference.
Also, the lithium orotate may help anorexia. I wrote to you in a different thread about how good it was for depression. It may be worth trying this supplement if you haven't already.
Please consider both of these things. I am routing for you!
Posts: 2380 | From New England | Registered: Aug 2011
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Have you tried cranial therapy?
Posts: 2117 | From USA | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Acupuncture can be helpful if you get the right practitioner. I've had acupuncture by some excellent practitioners that was very effective, and acupuncture by poor practitioners that did not help or even caused greater problems.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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